Thursday, August 11, 2011

It's Just Arthritis

I’m reluctant to complain because I know that I am one of the fortunate ones who, so far, has a mild version of RA and I can maintain a somewhat reasonably active lifestyle. On an average day, I don’t hurt badly but I am certainly no where close to being pain free. Living with a chronic disease means that we have to work harder at everything than normal healthy people do. It takes more from us to simply get out of bed in the morning, to exercise, to working at our jobs, but this also includes having fun.

Many of you know that I still ride motorcycles, but my riding is often hampered by pain. I always ride with my backpack that includes a 50 oz CamelBak bladder of water, 2 tubes, tire irons, a MSR tire inflation kit, first aid kit, maps, flashlight and ... Tylenol Arthritis. We ride from anywhere between 100 to 260 miles on most trips. On most of the rides we do, we may not see a house, much less a small town for most of the day so we always ride prepared and adjust what we carry for each ride. There have been many rides that even after taking Tylenol Arthritis I am in quite a bit of pain by the time I finish a ride.

My rheumatologist seemed truly shocked when on my last visit I told him that I hurt everyday. I’m not sure which one of us had the more confused look, him that I said I hurt everyday or me being shocked that he had not understood this before. My personal opinion on this is the MTX/Humira combination is working pretty good so far. I do not want to be required to take a pain pill just to make it through the day (other than an occasional Tylenol Arthritis). As the disease progresses, my view on this statement may change. But is this just me accepting what the medical machine has pushed off on us? I often say that I am not going to let this disease dominate me ... truth is it does so more days than I would like to admit. I still work a full time physical job but many days I can barely walk out to my truck at the end of the shift. Would this be acceptable if I had another disease instead of RA? In my opinion, the medical field is content to just push us off in the corner, under the stairway, with the latest, new improved RA drug so they can go back to working on something important. After all ... we just have "arthritis".

17
comments:

I suppose you wanted my bp up today? Well, you did it! RRRRGGGGGG! Your doc should be fired in my humble opinion. How in the world has he not asked you before about your pain level, the ability of which you can function, etc. etc. Pushed off under the stairs indeed. I want to push him down the stairs!! This in my humble opinion is just not acceptable and all ra docs should be asking these questions every single visit to ensure they are accomplishing the goals set out. Did you both agree on a set of goals or am I assuming this. No, you should not be walking out of work in horrific pain...the treatment plan in not working then in my humble opinion. Please set some very specific goals with this doc: ie - I want to be able to complete my 8-10 hour shift of work and be able to go home pain free at the end of the day. I want to be able to ride my motorcycle on the weekends for 100 miles and not be cramped up when I get off, etc. etc. Maybe if you both agree on specific goals of functioning, this would give you both a better measuring stick on success. Go get em!!

Deb, I apologize. I didn't mean to get your BP up today. I actually have a pretty good rheumatologist, I had a very bad one right after initial diagnosis. We talk regularly about how I am doing and I am constantly telling him about riding and various activities that I do and I guess he just assumed that I didn't hurt by doing these things. I have serious damage in my hands and feet so I am quite use to hurting everyday there. Plus I work a physical blue collar job (printing press operator) that requires me to be on my feet (and wear steel toe safety boots) most of my shifts. I feel fine, most days, before going to work but after walking back and forth checking paper and ink stations (press is 180 feet long and is 3 stories tall) my feet start wearing down after 4-5 hours. I wear a pedometer and on average for a 8 hour shift walk 15,671 steps. My high total was on a 12 hour shift, 26,443 steps. Then some nights there is extra stair climbing due to paper breaks. He has given me prescription samples for Metanx to try to relieve my feet and it really did make a difference. However one of the side effects was diarrhea ... no thanks, I would rather have my feet hurt and have complete control of other bodily functions!

Thanks for the suggestions, I am going to talk to him about setting a goal of being able to ride with less pain

As I read the last few sentences of your post, I nod because the words are very familiar to me. I am in the same place you are. My RA is pretty moderate but I am in pain every day. I continue to keep a fulltime job but there I days where I can barely make it to my car at the end of the work day (and I do a desk job). I have uttered the same words about the medical field. I think that we still live in a society that sees autoimmune forms of arthritis as just “arthritis” and as a result, the medical community does not see us as a priority. I pray for remission daily. I used to wonder how someone could live with so much pain and still manage to keep going. Until I experienced it, I couldn’t have understood. You would think if more people, especially celebrities, talked about RA, it would be more recognized. But it is not, it is disease that people hide. We do it so do celebrities. Why is there such a stigma associated with it?

I also can SOOOOooo relate to this. I don't ride motorcycles, but work a physical job (now) and have daily pain, if not by the time I get off work, always by the time I sit down after and it gets worse during the evening after work. The meds only do so much, then I can't walk by the end of the day. My feet hurt worse after I sit down at the end of the day. They hurt when I wake up. Sitting makes my back hurt. Sleeping is hard on my neck and shoulders. Work and driving are hard on my wrists, etc. Like Tharr, I have both RA and OA. For a couple of months I was doing good on a new split combo of mtx and plaquenil that allowed me to finally get off of prednisone after years and years. I'm about a month off of prednisone now, and can tell that I have more active inflammation creeping back, but without very much swelling. It wasn't a great dmard, but I think prednisone does have some dmard effect, aside from just helping with pain. Not sure what my new rheumy will react to that, but I know my body knows what's going on. Time to figure out what to do from here too.

Lana, why is there such a stigma? I'm guessing because most of it is invisible.Chelsea

Lana, I wish that they would not have named our disease rheumatoid "arthritis" (I believe it was Kelly at rawarrior who had a post on this at one time) because people do view it as "just arthritis". I feel for you Lana, after barely making it to the truck and then driving home, trying to get out and walk in to the house is even worse. I hear people talk about it, but I am not convinced that true remission exists, I think there is clinical remission. I think that would be a good post Lana, the stigma associated with RA.

Chelsea, I have thought that I need to find an easier job but in this economy you can no longer walk down the street and find another job. Plus, I really like what I do. You are so right about sitting down at the end of the day and it getting worse! I find myself occasionally walking on the sides of my feet because the bottoms hurt so bad to touch the floor. I hope you can get the drugs and inflammation sorted out quickly.

I think the invisible characteristic of RA certainly adds to the stigma. If outsiders can't see anything obvious wrong, then it can't hurt that bad.

T - right now it's the tops of my feet that hurt. I had the bottom of the feet pain (ok, I still get that a little) but figured out it was plantar fasciitis. Got some of those Dr. Scholl's custom inserts at Walmart and that took care of the problem. Also, at first, used old foot splints from mom and dad from previous other problems they had, slept in those at night for as long as I could stand and hobbled around on them during my two days off of work. Then I got the shoe inserts. That combo took care of the walking on rocks and crawling to the car, etc. I've been toying with buying some night foot splints wondering if they might help the top of the feet pain. I don't know if the top pain is RA or OA or both. Sometimes when I go to put down my foot or to get ready to stand up from my chair at home, it feels like I've broke bones on the top side, or that ligaments or tendons must be sliding across bones. But they ache too all night long. Then I have tightness in the muscles on the top of the foot, and in the morning when I get up, this tightness goes up my calves too. Fortunately in the morning it works itself out pretty quick.

My old job was a desk job, and the new one I am on my feet whole shift. Maybe sit for five minutes two to three times a shift. Get stiff fast. But I say now that I am glad I have a physical job even if it pays only a small fraction of what I used to make. I can't imagine how stiff and painful I would be working at a desk job now. I wouldn't be able to do it right now, so I AM glad for the job I have now. At least it keeps me moving and a lot, but not all, of the pain away until the end of the day. I know we can't get rid of all the pain, but we keep pluggin' away to deal with it as best we can under all the circumstances. But yes, docs don't realize how much we do grit our teeth through every day.Chelsea

Chelsea, I have inserts similar to the Dr Scholl's that I get at the shoe store where I get my work boots. At first I didn't like them, now I don't want to wear a pair of shoes without them. It's funny that you bring up the RA vs OA question, I think the same thing sometimes. I have broken 2 toes and 3 bones on top of my right foot plus my right ankle twice (motorcycle racing can be rough somedays) and I think that somedays I am feeling some OA in addition to the RA. I also worked a desk job for a few years with a different printing company handling special accounts. I have been back on my feet for 11 years now, somedays I'm glad I have a physical job, somedays I am not. Part of my job involves pushing rolls of paper to load onto the printing press that on average weigh 3400 pounds. On my bad days, this can be quite hard by the end of the shift. Hang in there and keep on moving!

Terry, I have thought about your post over the last day. I was in my 20's when I was first diagnosed and have had the same doctor for 25 years. I think he is great and I am so afraid he will retire. I asked him recently if he was thinking about it because he had cut his hours back. He responded that he would have retired a long time ago if new drugs hadn't been developed. He said it was sad and frustrating to tell people that they had tried everything available and that nothing new was coming along. I think sometimes the docs are as frustrated as we are. Like you, I try to be very active (sometimes to a fault). I want my life back so badly that even after all these years I force my body to do things and then pay later. I think the doctors think our pain must be minimal since we are able to do these things. They don't realize that we do these things in spite of the pain. You have to remind them that you still have pain. Let your doctor know just how much pain you are in and how it affects your daily living. He may pull out the pain killer card (mine did last visit). The reality is that there is only so much they can do. I get angry about this but this is a beast of a disease and even at the best of times I think there is always some pain.I was sitting at my desk the other day and my knees were just screaming. I stopped what I was doing and tried to readjust in my chair to lessen the pain. No help there so I just went back to work. I thought how strange it is to just get use to and accept living with this much pain daily. The average person would be beside themselves with this pain. I do believe in remissions. I had what I think was a drug induced remission in my 30’s. I still had pain but not the crushing pain that I had at the beginning and some days now. Hang in there Terry and let your doctor know about the pain every visit.

I had to kind laugh when I read this because my rheumy assumes I am ALWAYS in pain, even when I tell her I am not. :)

However, after cleaning the basement last week, I could feel every joint in my body. Hard physical work (like biking) definitely affects how we feel. I am always impressed that you continue doing what you love!

It's amazing--almost stupifying--that your rheumatologist was surprised by the fact that you cope with pain every single day, Terry. As a specialist regarding RA, this sort of continuous symptom is news to him? I don't blame you for being frustrated with him.

"...many days I can barely walk out to my truck at the end of the shift. Would this be acceptable if I had another disease instead of RA?" What a great question! And the answer is "no," of course. Yet the opposite is true for those of us who must live with this disease day in and day out. Sigh.

You didn't mention whether your doctor followed up his surprise with new options for helping you cope with the constant pain. Did he have the grace to do that?

As always, Terry, wishing you the best and sending hugs. Thanks for writing such a thought-provoking post.

Mary, this is a very interesting, thought provoking statement. I had not considered the rheumatologist side in treating people that you know you can help (some of them anyway) but not cure.I know all to well about wanting my life back. I would give anything if I could work all day without hurting, ride my bicycle whenever I wanted to or go for a run first thing when I wake up. Living with this disease makes us tougher. I often try to adjust my stance or sitting position only to find it only made it more painful. Good advice Mary, I plan on letting him know about the pain now on every visit.

Hello Cathy, I think he just assumed that I was ok since I work full time, workout and ride motorcycles. The truth is I think most of us live with way more than an acceptable level of pain every day. I can still move and push myself to keep going so I do. I know what severe pain feels like, so when it is at a lower notch, I am ok with it.

Wren, so good to hear from you! I think that, by his own words a few visits ago, "I wish all of my patients were doing as good as you", he thought I was relatively pain free. I like my rheumatologist, he has let me experiment with different treatments freely, has good input when I ask him something, has his own lab in his office so you get your bloodwork results by mail in 3-4 days after a visit. I was just surprised that he was surprised.I work a very physical job and the truth is I have wondered how long I will be able to continue doing this job. Part of my job is pushing 3400 pound rolls of paper around to load onto and off load off of the press (about 45 time a day), climbing stairs, getting down on my hands and knees when we have a paper break plus standing on concrete in steel toed boots. It even hurts normal people somedays. We did discuss meds but I told him I wanted to stay with what I have for right now. When I am not at work, most days I feel pretty good.

Megan, you're absolutely right. I feel that many friends/co-workers as well as many in the medical field DO view it as just arthritis though. I have only been at it for 8 years ... it already seems like a lifetime. I can't remember what it is like to just jump out of bed and go do anything that pops in your head. It must have been great. I hope that I have the patience and perseverance that you have should I make it to 20 years battling this disease.

It seems like I'm in the same boat. In my job I do get physical being in the commercial roofing industry. I'm on a roof every day with my 45 lb bag doing tests. I deal with stiffness in the am and by 1-3pm I'm reaching for my tramadol. Im very thankful that I am not as bad as some of the other posts I have read. But I believe my high pain tolerance is fooling me to believe I'm not that bad. My left hand is about half as strong as my right one and one day my left ankle feels broken then the next day it's my right hip. As of right now I stopped taking Mtx but continue with embrel and hydro. I'm starting a heavy vitamin regiment on Monday so we will see what will happen. Good luck and I hope the best for you.

Jeff, I honestly don't know how you do your job. I have noticed over the years (Had RA 8 years now) that my footing isn't nearly as stable as it was. This would be scary up on a roof. I'm the opposite, my right hand is weaker than my left. Hang in there, hope you can stay active for a long time.

Ashley, you're so right. I'm not sure if they just forget or are testing us to see if we really can't do some things. I feel I have a good rheumatologist as well. I think that because of my tough exterior and maintaining a somewhat active lifestyle, that he just forgot that I would be hurting like everyone else he sees.

About Me

I live with a chronic disease (RA) but still ride all that I can. Riding is my therapy. RA is a strange disease to live with, one day it is all I can do to get out of bed and walk to the living room, the next day I may go ride 150 miles. I do not live or ride pain free but will not give up on enjoying life. I have been reduced to adventure riding, the least strenuous type of off road riding. RA limits my mileage to 150-200 miles a day. I currently own a 2013 KLR650 which I ride every chance I get.